Medical Treatments and Research Information

 


2007 OI Clinic Directory

Diagnosis & Testing

Discovery: Recessive Forms of OI. Recent discoveries expand our understanding of OI. This article summarizes the new information and explains why this discovery is important.

FDA Statement: Bisphosphonates and Pain
 

Bisphosphonates and the Risk of Osteonecrosis of the Jaw (ONJ) in Osteogenesis Imperfecta

The
Medical Advisory Council has prepared this statement to ensure you have the most accurate, information about this family of drugs, developed for treating osteoporosis, and their potential for treatment of OI.

Forteo
Developed for the treatment of severe osteoporosis, this specific drug has been the subject of much debate and discussion in the OI community.  The Medical Advisory Council has prepared this statement to ensure you have the most accurate, information about the drug and its potential for treatment of OI.

Vitamin D
A recent study in
Canada looked at Vitamin D levels in children who were treated for fractures at a hospital emergency room during the month of April. None of these children had OI. 40% of these children had low levels of Vitamin D.  This suggests that low levels of Vitamin D may contribute to the risk of a fracture.  Of particular interest is that this study matched Vitamin D levels to the child’s weight, not age.

In response to this study, Dr. Jay Shapiro and his nutritionist, Eileen McMahon, of the Kennedy Krieger Institute, Baltimore, MD, are working with the senior investigator of the Canadian study, Dr. Adrian Jones, Department of Pediatric Gastroenterology at the University of Alberta in Edmonton. They are trying to apply this information to children with OI. In the future, they hope to have a set of guidelines for Vitamin D for children who have OI, based on weight.  Click here to read more >>


Recessive Form of OI Discovered

 

Genetic Cause for Recessive Form of Lethal OI Discovered by Foundation's Medical Advisory Council Member

 

Gene Targeting:  Potential Treatment or Cure for OI

 

 

Grant Information
  OI Foundation Grant Applications
  2005 Research Update

36 years of research
  A summary of research efforts

 

New Studies:

  Adults with OI
  Several centers across the United States are participating in a study on the effectiveness of Forteo as a treatment for adults with OI.Click here for details about the Kennedy Krieger Institute, Baltimore, MD trial.  Click here for details about the Oregon Health Science University, Portland, OR trial

  Children with OI
  
Studies are currently recruiting participants. Click here for details.

On-going Studies
 
OI Type V study 
 
(for Children/Adults with Type V OI)
  Bisphosphonate Studies
  (Various participants/investigators
)

Information for Potential Participants
 
 Medical Advisory Council Statement
  (statement on bisphosphonate use)
  Clinical Trials Fact Sheet
  (general informaton about clinical trials)
 
Bisphosphonate Q&A
  (information for potential participants)

Results of Previous Studies
 
Bone Marrow Transplants
  (for Children with Severe OI)
 
Results of Study on Pamidronate Use
  (in Children with OI)


Surgical Rods
Children and adults with OI and their medical teams have an additional option when rodding surgery is required. The Fassier-Duval Telescopic Intramedullary System is approved for the surgical treatment of bone deformities and fractures in patients with osteogenesis imperfecta, for persons 18 months and older, and can be used in the femur, tibia or humerus. During clinical trials it was reported that the time in surgery was shorter, blood loss was less, complications were fewer, and rehabilitation was quicker when compared to other styles of rods. The Fassier-Duval rod requires only 3 weeks of post-operative immobilization, and according to the developer, causes less trauma to joints, bone and growth plates. Pega Medical, Inc., manufactures the device. Surgeons require training in the use of the system before being authorized for use. For more information, visit www.pegamedical.com.


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